A better idea

By Peggy | November 2, 2010 |

Sometimes we look askance at parents who put their baby’s name on a waiting list for a prestigious preschool before they are even born.

As if the path to adult success is really that narrow.

Yet, if your child is born with a lifelong condition that will affect their ability to care for themselves, such as Down’s syndrome or autism, parents are encouraged to “guess” what services they might need later in life and put them on a waiting list for services. Those lists, in Texas, are DECADES long.

And recently, Texas created pilot projects for MORE waiting lists for services.

The whole thing is a farce.

Last weekend, at the Njoy Foundation conference, Resources for Parents, I learned about a statewide group that is trying to change the model for Texas. With a bad budget year, they have a mighty, uphill battle.

But it’s got to happen. Last year, 53 people died in state institutions of preventable causes, including one person at the Lubbock facility who was suffocated while being restrained. Of course, nearly every one knows about the notorious “fight clubs” organized by some of the staff at the Corpus Christi facility because one of them recorded the fights on a cellphone.

The Department of Justice has been monitoring Texas facilities for rampant civil rights violations.

To learn more about this group that’s promoting inclusive communities — which means the money follows the client rather than the other way around — visit their website: www.communitynowfreedom.com.

Posted in adults with autism, hope, problem-solving

Making Good Decisions

By Peggy | October 27, 2010 |

(The short version of last month’s blog posts)

Parents make decisions about or for their children every day. But parents of kids with special needs often make decisions about their children’s treatment and education long after other kids are well down the road of self-determination. Those decisions, therefore, can have far-reaching effects on a child’s quality of life.

Parents should give some thought to how they make decisions and whether they bring hazardous attitudes or fallacious thinking to the process. With that awareness, these six guideposts can help parents make thoughtful and ethical decisions – and create the best chance for success.

Guidepost 1 – The quality of information affects your decision making
Know what resources are available to you and how to evaluate them. You have rights and responsibilities in gathering and evaluating information – exercise them, because getting the most robust information is the foundation for every other guidepost.

Guidepost 2 — People’s skills and expertise effects decisions and quality of life
If you know the ethical guidelines for the professionals in your child’s life, it helps you recognize if a treatment protocol or interaction is on the edge.

Guidepost 3 – Good decisions depend on the quality of social interactions
When the professionals speak with you, they will use accurate terms and descriptions and the intent and impact of their words will be clear and effective. We parents have responsibility to be an effective member of the entire caregiving team — and, to the best of our ability, solve problems in a positive way.

Guidepost 4 — Family preservation will affect quality life
Most of us are dealing with something that lasts a lifetime, not a few years. Decisions need to keep in mind that this is about the rest of your life, your child’s life, and your family’s life.

Guidepost 5 — Treatment procedure selection will affect quality of life
A treatment choice should have the most constructive, and least restrictive, impact on your child’s life. Make sure you are thinking long-term, with whole-life considerations. Therapists don’t always think 20 years down the road, the way we parents do.

Guidepost 6 — Ethical treatment decisions are readily accountable
For many providers, that means “do good and take data.” For parents, that means a good treatment program with a well-trained provider is going to have some measures that you can see and understand.

Posted in decision-making

The best humble pie

By Peggy | October 26, 2010 |

Last night, I shed some major baggage thanks to Sam. We’d spent a long day helping out at a community event. He wanted to say good-bye to one of the organizers because “she’s a very nice lady.”

She’s also very pretty. Sam, like any red-blooded fellow, likes a pretty woman. I teased her husband just a little bit.

“Watch out,” I said.

There was an awkward pause, and then Sam said, “He doesn’t need to watch out.”

Oh, don’t even bother cutting up the crow, just hand it over and I’ll stuff it in there with my foot.

All of my children are gentle souls who have a great deal of respect for personal boundaries. Unlike their father, who was a gentle soul, too, but struggled mightily to keep boundaries where they belong.

I learned last night I don’t own their father’s errors. Not in the least. In fact, I don’t need to watch out at all.

Posted in hope, What Sam says

Resources for Parents Conference

By Peggy | October 24, 2010 |

For minimal travel, and a low cost ($10 includes lunch), to this new conference in Fort Worth, you can get a more information and help than you would at a resource fair, but without the time demands of a major, all-day, or multi-day event far away.

Here’s the schedule.

And in the spirit, I’d better figure out how to trim a 90-minute talk (which was already trimmed from a half-day presentation) to a half-hour …

Posted in decision-making

The “Empathy Deficit” fallacy

By Peggy | October 20, 2010 |

At the risk of falling to the theory of self-reference, I’ve always been skeptical that people with autism lack empathy. I’ve just never seen that deficit in Sam, nor in any other people with autism or Asperger’s that I’ve met.

I got to thinking about that after reading this piece in the Boston Globe, which goes to some length to describe how our kids apparently are lacking it.

Empathy, by definition, means some kind of emotional response to the pain or suffering of another. Babies and children don’t always demonstrate their empathy the way adults do — that’s part of our socialization — but they feel it just the same.

My guess is that some of us not on the spectrum look for empathy to be demonstrated in a tangible way. Then when we don’t see it, we say “a-ha, that person with autism lacks empathy.”

The Boston Globe article even spelled that out with a list of tasks an empathetic person is more likely to do. Most of them, I could imagine Sam doing, but not always for purely empathetic reasons.

For example, “return incorrect change to a cashier” could also be following the rules and keeping things correct.

The next two, “let someone else ahead of them in line” and “carry a stranger’s belongings” requires a person to break a social rule about getting into another person’s personal space. Sam does this all the time at Albertsons because he is a courtesy clerk and it’s expected of him. I’ve seen it generalize.

“Give money to a homeless person,” “volunteer,” “donate to a charity,” check, check and check. In fact, we talk about picking our charitable causes with purpose.

“Look after a friend’s pet or plant,” been there, done that.

“Live on a vegetarian die.” Sorry, we’re in Texas and he’s meat-eater. But butchering day comes with much reverence. We all know where our food comes from.

Sometimes I think we overreact to perceived deficits.

Sam doesn’t hug me. I don’t ask for it. Here’s why. The few times we do hug, there is so much human connection, I can almost feel the nuclear fission begin. Better not to disturb the universe like that.

Posted in adults with autism, love, social life